Just Doing It (Part I: The Sammie B Edition)

Sit down for a bit, if anyone is still checking in.  This is going to be a long one.  For weeks, I've had a folder of pictures saved on my computer for a blog post; I've had a draft blog post and "finish blog post" has been on my to-do list that I carry with me everywhere.  But that list also includes things like "call Dr. x and reschedule," "read list of iPad apps," (from developmental optometrist); "check on insurance for power chair," "review IEP goals," "IEP meeting," "send marriage certificate to insurance" (which for some unknown reason suddenly has questioned whether I should be on B's insurance) along with a million work to-dos, and for whatever reason, I've been unable to tick off the to-do list the way I usually can/do.  Sure, I've made all the phone calls, I've been to all the appointments, I've done the work that has had to be done, but the optional things on the list, or the "can wait until later" things, haven't gotten done. Sometimes, it feels like I can never do enough, and I fall into these schlumps where that "I can't do enough" feeling overwhelms me, and makes the weight of the day seem like too much.  I know that about myself, but it never makes the schlump any easier to climb out of.  But tonight, after a stressful evening and a few days of being solo with both girls (B is traveling for a conference), some rough bed times (our every night lately) and one little girl (whose name starts with an "M") who always has a rough time when B travels, I  know that right now, I need to sit and finish this post.  I need to write about all the every day, amazing, wonderful moments that make my heart feel like its going to burst with love and joy when I think of them.   I need to focus on those.  Not the overwhelming to-do list, the brief that needs to be written, or the bed time drama.   Tonight, I need to focus on the magic.  And writing about it always helps me do that.  

So . . . .

These two girls.  My Sammie B and MiaMia.  They rock my socks off.  Cliché as it may be, it is utterly surreal to me that I have these two girls, these two little people with opinions and ideas and stories and experiences and such amazing perspectives on the world.  Both of them talk non-stop, and the things that come out of their mouths blow me away.  Not a single day goes by that I don't think to myself, "I never even knew it was possible to love someone else as much as I love these little girls."   The two of them absolutely delight in each other, and I delight in them.  We delight in them. 

In their Easter Best . . .

And here's a little bit about what's been going on with us, and a little bit of the magic I'm delighting in, day in and day out.  I couldn't possibly capture it all, but I do have a little list of things I jot down (that were in my draft blog entry) because I want to remember them always.   (I warned you, this is going to be long . . . much of this little chronicle of our lives is for my own purposes; I want to remember them, exactly as they are, always, but I also love sharing with you.  I love sharing this journey, and while my lack of blog posts has made me think maybe I should just hang it up, I'm not ready.  Because this world -- the internet and community of mothers I've met on here -- the sharing of our stories, our children's stories, and our lives, in particular on this "special needs" road less traveled, has brought me so much sunshine.  I'm not ready to not do this, however infrequent my posts have been.  Psstt.  Leave a comment, let me know you are still there!).   Anyway, a long post is long overdue, and so I'm breaking it up into parts.  Starting with my biggest girl:

My Sammie B . . .

• At five-and-a-half, Sammie B has an intense need to know what we are going to do each day.  I am a planner by nature (and I always joke that social plans with us can't happen unless you get on the calendar weeks in advance; not because we are so popular, but because, I am a Planner; spur of the moment is not my style, though I've been working on that (and finding joy in it!)).   Anyway, I wonder where this comes from with Sammie -- is she too just a planner?  A little Type A?  Is it because her world is so full of appointments (some of which are no fun for her) that she has anxiety and needs to know what's next?  Is it just who she is?  Is it just a typical kid thing?  Her first question, everyday, is "what are we going to do today?" and then "what about tomorrow?"  and "the next day?"   I patiently go through each day with her.  I get it.  The girl likes to know what to expect.  I can also totally understand that if your world is filled with appointments, some of which move around week-to-week, it's nice to know what to expect, and when to expect it.  I'd made an awesome pinterest-worthy picture calendar for her, but like many things, we weren't consistently remembering to use it each day (something I loathe about myself, but I'm going to ride the "self-forgiveness" train tonight and not beat myself up).   We do a lot.  Routine is not always our strongest suit.  

• Sammie is the first to tell her sister when she's misbehaving (with a "MIA, NO.  We do NOT do [fill in the blank]!" (which sends Mia immediately into tears, saying "Sammie told me no! I'm so sad!"), but Sammie is also the first to tell her sister that she loves her when Mia is sad.  When Mia cries at bedtime, Sammie always says, "It's okay, Mia, I'm here.   I love you, Mia."  and I melt.    They really, really love each other. 

• The other night in the bathtub, Sammie sat between Mia's legs, and Mia combed Sammie's hair, and Sammie called out to me, "Mama, I feel so happy! Mia is making me happy!"  That made me the happiest.

• I recently told Sammie that my mom (a teacher) might have a little girl in her class next year who has cerebral palsy, and I said, "You can teach Gigi about CP.  Is there anything you think Gigi should know about CP?" and she said, "it makes you tumble!"   Well said, my girl.  I still look at this child, at how hard she works, at how she perseveres, and I feel such intense pride, but also a wistfulness that I can't completely explain.  While Sammie B, exactly as she is, has enriched our world -- not just OUR world -- but THE world -- in immeasurable ways, I still wish she didn't have to work so damn hard.  Oh if only I could give her "easy." 

• Sammie B has such an incredibly sweet and cool connection with my mom.  When my mom visits, Sammie lights up.   One of my own shortcomings is that I don't just sit and play well . . . I'm restless, and in general, don't do "just sitting" all that well.  I sit to play games with the girls, or to draw, or play with play-dough, and I am constantly up and down doing other things.  But my mom.  She can sit and play with my girls for hours on end.  And they love it.  She must have sat for HOURS playing with Sammie's new Frozen princess castle at Christmas time.  And the "teacher" in my mom is just incredible with Sammie.  Patiently teaching her new things, giving her the confidence to "just try" and celebrating like a crazy lady when she does.  Playing tic-tac-toe, helping Sammie make "O's," talking to her in the most magical of ways.  I love sharing my girls with my mama.  It might just be one of my favorite things ever.  When my mom visits, Sammie B insists that my mom sit next to her in the car, she asks for her the second she wakes up, and she recently asked to call my mom and then said, "I wish you could visit everyday."  Oh Sammie.  (Gigi agrees!).   Their bond is just something special.    The last time my mom visited, Sammie B played sick at school for the first time ever!  I got a text message saying "Sammie says she doesn't feel well and wants to come home," and then moments later, "Never mind, I pressed her a bit, and she said, 'I'm not really sick, I just want to go home because mama's mama is visiting and I want to be with her!'"   Sweet lover. 

• Speaking of my mom, she taught Sammie to play "I spy" on car rides, and now every where we go, Sammie wants to play it.  Mia has learned it too, and the way they say "I spy with my little eye" is so cute.  Neither one of them quite "get" that you have to actually SPY something before you name it (rather than just naming a random color and saying "no" to everything the person names) or it is sort of NOT FAIR to the people you are playing with, but we have fun.  (Well, to be fair, Sammie does "get" that, but she thinks it is hilarious anyway).  

• Playing dress-up remains a constant favorite for Sammie.  "#costumeoftheday" is a frequent instagram label for me.  Sammie would be dressed "in character" all the time if she could, whether as a doctor, princess (mostly princesses), pirate, or chef.  She loves it.  I love her imagination.

Tinkerbelle, possibly over-accessorized

Mermaid Barbie

• Sammie B is a girly girl that loves clothes.  Every single day she asks me to wear a dress, and every single time we go to a store, she asks for a new dress.  I love this about her.  Last week, we had an unexpected afternoon, just the two of us (one of her appointments was cancelled) and she chose to go shopping.  But the entire time we were looking for a new shirt for B, she was declaring "I'm so bored!  This store is boring!" and then asked, "Can I have a new dress?"  When I said, "Sammie you have tons of dresses!," she said, "but they are all dirty!  [not true, by the way] I have nothing new to wear to school!"   How old is this child?!  I'm just happy she's thrilled with a sassy new dress or shirt from Target, so her love of fashion isn't a huge financial hardship. 

A new dress Santa brought + a little sister photo-bomber

New spring duds!  thank you, Target. 

A new dress picked by Sammie on the way to checkout at Target - I'm a sucker. 

• Our only real Easter tradition is that we let Sammie (and this year, Mia) pick out their own Easter dresses.  Since Sammie B loves poof and lace and all things sparkly, Easter is really her season.  This year, after she saw the Easter Dora special, she was also convinced she needed an Easter hat.  So, B took her to pick one out.  She also got one for Mia, because Sammie B never, ever picks out anything for herself without getting one for Mia too (melt!). 

More Easter fanciness - for an egg hunt at Mia's school

Officially my favorite photo "shoot" ever.  Photos by B. 

My new phone wallpaper, and a picture that makes me smile at least 8,000 times a day. 

Easter at home (we had an egg hunt with friends here, and mimosas. It was a perfect day!)  PS.  Another favorite picture.  No words for the way Mia looks up to her sister. 

• Sammie B's confidence has exploded this year, and that makes me happier than words could say.  We attribute a ton of this to her new school.   Sammie's personality is just such that we often worry that her fear of failure is keeping her from trying new things (she's her mother's child), so we made "confidence" our number 1 goal for her this year, and are over the moon with joy.  She swims up to other kids at the pool, asks their name, what they like, how old are they, etc.  After one of those times, she swam back to me and said with utter and total glee, "mama, I made a new friend!".   I was (and am) so, so proud of her.  School this year has exceeded our wildest expectations.  It's been, in short, amazing. 

• We decided to start giving Sammie B an allowance -- if she cooperates and works hard all week at all the things she has to do, if she chooses good behavior, etc., she gets $5 on Sundays.  (MiaMia gets $1).  If she chooses bad behavior during the week, we have something we can take away.  She has a sparkly purple wallet, and she loves it.  Except she won't take it anywhere with us.  "Why?" you ask.   Because, as she so clearly explained to me, she would rather have me spend my money and her save hers.  Well, bless her honesty.  Really.  That child.  (PS. at school, they were talking about mother's day and they were sharing nice things about their mom.  Sammie B raised her hand and said, "my mom buys me nice things! I like that!"  Yes, she does.  And she's lucky her mama is a sucker for a sparkly purple wallet too.)

• Sammie B loves dinner time.  She likes for all of us to sit around the "big table" (in our dining room) and chat.  She isn't a big eater (a source of much arguing and bribing all the time) except for when it comes to dessert, but she loves dinner time.  She loves for each of us to talk about our day, and she always asks Mia, "what did you do at school today, Mia?"   The other night, it was just the three of us (B's conference), and I came up with a new dinnertime game --- the "I love you game" where we each took turns telling each other something we love about the other person.  Sammie told Mia she loves when Mia helps her do things that are hard for her (I melt!) and she said she loves when I let her sleep on my shoulder, and when I pick her up at school.  (I melt!).  [At two, Mia didn't quite get the game, but she said she loves when we roar like lions, so we did, she giggled in delight and we all had a blast.]

• Bedtime at our house is . . . exhausting.  We give the girls ten minutes of talking, but they call us back in there no less than 8 zillion times every night.  But still, despite sometimes wanting to bust down the door and tell them to JUST GO TO SLEEP, it is a charming time.  Some nights, for an hour or more, the two of them just talk and talk and talk.  B always says it is "their time" and it is true.  They take turns telling each other what to do, they perform for each other, Sammie makes up stories and tells Mia, they show each other pictures in their books, they get into mischief.  I love it.  I also love that when they are doing things they aren't supposed to do in there at night, and I either talk over the monitor or go in there to tell them to stop and go to sleep, Sammie knows she's been busted and immediately flops down and pretends to sleep, while Mia just stands there smiling.  That makes me giggle.  Big time.  They make me giggle.   

Nothing  makes Sammie happier than matching nightgowns. Much to her chagrin, MiaMia is often more of a t-shirt girl, but occasionally, we convince her to wear one of the MANY matching nightgowns Sammie has picked out for them. 

• They love each other, and Mia also gives Sammie the confidence to try new things.  Sammie can be (though much less so these days!) so timid and shy about trying new things, or even new words, but there's something about laying in bed, with her sister in the bed next to her, that gives my girl so much confidence to share.  They talk and talk and talk, and we listen, and we (mostly) laugh.  We delight in it.  When I was pregnant with Mia, I feared that by adding a new kid to the mix, we'd be taking something away from Sammie. That we wouldn't have the resources or time to do all that we were able to do for her, simply because we'd have a new little person needing our resources and time.  In a moment of panic, I cried, and made B promise me we wouldn't let that happen.  That we would still make sure we did everything we could for Sammie, everything she needed.   And now, thinking back to that moment, and those fears, and looking at our right now, I can say, with so much confidence, that Mia gives her sister so much more than she could ever take away.  So much more.  They give each other so, so  much, and I love it.   Love them.  The duo.  What a gift they each are to the other. 

 

• Last night, I was just sitting down to start working (or procrastinating work, which is more accurate and honest) and the girls were in their room talking.  Suddenly, it was quiet, and then Sammie B started laughing so hard.  Like belly laughs.  And then Mia burst into tears.  I went in, and there was Mia, standing in the middle of the bedroom floor.  Sammie could barely get the words out she was laughing so hard:  "Mia just climbed out of her crib all by herself."  Thankfully, other than having bit her tongue when she landed, Mia was okay (but my plan to keep her in a crib until college is now foiled; we'll be converting the crib to bed this weekend), but crying.  I told Sammie, "Sammie, stop laughing!  Mia is hurt, and that's not funny!"  And Sammie said, "but it was funny when she climbed out of her bed!  And I'm going to tell her to do that again!"  We had a talk about safety, I marveled at how Mia accomplished it, and asked Sammie to explain how Mia got out of her bed, and Sammie kindly gave me a play-by-play.  Mia promised she wouldn't do it again.  Today, Sammie told everyone about it.  Such a highlight of her week.   (I also recently read a blog about things you'll learn from your second-born child, and one of them was something about how you will learn that the youngest child will do anything again if it makes the older one laugh, and the older one does not laugh at good behavior. . . . so very true in our home!)

• Back in the fall, we hit a wall in physical therapy with the therapist we've worked with for the last two years.  In short, Sammie B was over it.  And in my head, I get it.  She deserved to be feeling over it, to be burnt out.  For four and a half years, Sammie B has had up to 8 therapy appointments a week.  She's been told what to do, how to play, and what to play with far too much.  She is, as our developmental pediatrician put it, a little "over-therapized."   Add to that her cognitive abilities -- Sam KNOWS what the therapists want her body to do; she knows what she wants her body to do, but her body doesn't cooperate.  And she resents the efforts to try to "trick" her into doing things her body just can't do.  That makes for a frustrating therapy session (for all involved).   She'd become so complacent, so despondent in therapy.  She said "no" to everything, there was little joy, it wasn't play.  Not at all.  She was done.  She couldn't be tricked into working anymore.  And so, that was when our PT (who I trust implicitly) suggested we take a PT break.  I cried.  I felt like our PT was "giving up," and it just felt like one of those punches in the gut that come along with this journey (that have the power to knock us over if we let them).  But a sweet (and smart) friend reminded me that Sammie was getting so much stronger in CME therapy, that it was just "traditional PT" that had little to offer Sammie right now.  And I knew that was right.  So, we pulled back from traditional PT (just seeing her once a month for a "check-in" and equipment consults), and have instead focused our PT efforts this year on CME (which we'd first done with Sammie last year during an intensive therapy session).  That method of therapy just works so well for Sammie.  There's no tricking her.  There's no "work" under the guise of "play."  Just work and honesty and transparency and clear expectations.  It's just "we are going to exercise your body;" "we need to do 5 of these and then we will do something else."  Honestly, I believe it works so well with Sammie because we aren't trying to trick her into thinking we are just "playing".  We are just leveling with her.  Talking to her like an adult.  And as a result, she's really doing it, and I'm so, so proud.  We find Sammie using her dolls and blocks and making them do CME (and she's tough, she says things like "nope, that one didn't count, start over!" just as her therapist does).   

Standing, with heel support only.   (On wooden disks that allow the therapist to provide additional balance/gravity input.  This method of therapy is amazing). 

Standing PROUDLY on blocks, with NO ONE touching her!!!!  Again, the therapist has the ability to offer correction for balance when needed. 

Walking with head support in CME.   The most natural gait I've ever seen from her.  I sat, photographed, cried, and kept saying "Sammie!"

Walking with B supporting only her thighs.  A CME-exercise.

• At the therapy center where Sammie does her CME therapy, they hosted a family day on the weekend after they opened their new facility, and Sammie was SO proud to take B and Mia and show them.  She said, "daddy will love it so much, he will cry!"  And she insisted her little sister do some exercises before we could leave . . .

MiaMia doing CME while Sammie B directed.

• I also recently joined a gym, and have started working out.  We tell Sammie B how important it is to exercise her body, and she does.  Oh does she.  Hardest working little girl I know.  And I've known for a long time that I needed to lead by example.  She should know I exercise too.  So, anyway, I took her to the gym, and showed her where I work out, and her first question was "do you have a PT here?" and my heart . . . oh my heart.  The perspective this little girl has.  Incredible.  Perseverance.  Perspective.  I could learn a few lessons from her in both of those things, no question.  And as I push myself to exercise even when it's hard, even when I don't want to, I close my eyes or I look down to my purple! running shoes, and I hear my own voice telling Sammie in a PT session, "come on babe, I know it's hard, just push through and we'll be done!"  Sammie B always pushes on.   I need to as well. 

• At the same time that we cut back on traditional PT, we also found an adaptive gymnastics place for Sammie B and so she's doing "tumbling" once a week and LOVES it.  It is incredible.  Everything they do with her there is very PT-like (like climbing over tumble form things, standing at parallel bars, etc. - which she would flat refuse to do in PT) but she's more intrinsically motivated because, well, it's not PT.  It's tumbling. And she's surrounded by other kids, big and small doing the same thing.  She's doing gymnastics, and wearing a fancy leotard, and that makes her confidence soar too.  I'm so enchanted with her.

Day 1 of gymnastics, her new leotard picked out by HER of course.  Purple and sparkly, what else?

• While the "break" or cutting back of PT was a hard pill to swallow, that's part of this journey. I know my fellow special needs mamas will understand this . . . that feeling like something always needs adjusting, tweaking, and little tweaks make big differences.  But for someone who herself finds change a little uncomfortable (ME!), this can be hard.  But if ever there were a girl worth this - it's Sammie B.  And the tweaking always leads us to new and exciting and things and opportunities.  Always.  Like the gymnastics. 

• Sammie B cannot be tricked.  That's also made therapy challenging.  The "oh you want to color, okay, then let's walk over and get that marker" business isn't going to work on this kid.  I sometimes laugh when I hear adults tell Sammie B the kinds of things we all say to placate kids (the empty things, the "because I said so" kind of things) and she immediately calls them out on it.  Makes therapy hard, yes, but I'm certain that spirit is going to take her further in life than any PT session ever could.  She's a cool kid.  No question.

• Sammie B is a mama's girl.  She still begs to sleep with me, and while I don't often indulge that (mostly because I can't sneak out of her bed in the mornings to get ready without waking her), when I do, she crawls onto me, puts her head on my shoulder, and I melt.  Still.  I love this little mama's girl.  With all that I am.  And when her head is on my shoulder, and she's softly breathing in and out and sleeping, all the worries, and to-dos and thoughts of tweaking and planning and adjusting really do melt away.  And in those moments, even the longest of to-do lists seem insignificant. 

Whew.  Knocked this blog off the to-do list and am glad I did (well, knocked 1/2 of it off my to-do list - stay tuned for Part II - the MiaMia edition).  There's nothing I like spending time sitting and thinking about than my sweet moments with my girls. 

To my two girls, I delight in you.  Each of you, and both of you.  You are amazing.  I am so, so lucky to be yours.  I love you with all that I am. 

One of my greatest wishes for each of you is that you will always delight in each other the way you do now.  That you will always look for ways to help the other feel a little more confident, a little more brave, and a lot more joy.  

Turned around in the car and saw this, and you guessed it, I melted (and grabbed my phone to take a picture).  

 May they always reach for each other.  

[I hate that the formatting of this post is all messed up and pictures are not aligned.  Some day, I'll find the time and technical know-how to get off of blogspot.  I've aligned every single picture the same, and it looks right in my drafting window, but not in the actual blog.  Same with the formatting for the bullet point about Sammie not being able to be tricked.  Just randomly appears messed up.   Am I the only one that has blogger formatting problems OFTEN lately?  Hate that, blogspot!  I was near the pounding-on-they-keyboard point, and lest I lose my zen moment post-blog, I gave up.]